Kevin Whately's Alzheimer's agony: 'Mum's forgotten who I am'

Monday 2 June 2008 23:05 BST

Actor Kevin Whately tries to visit his 81-year-old mother, Mary, twice a week. Sometimes she remembers who he is; other times - in her confusion - she mistakes him for her father, or her late husband, Richard.

There have been times, however, when Kevin's face - one of the best known in Britain, thanks to his huge TV success - hasn't registered at all, and she has had to ask him: 'Who are you?'

Recently, he has tried to coincide his visits to the West London nursing home where Mary lives with the afternoon repeats of Inspector Morse, the series which turned Kevin - who played Morse's sidekick, Lewis - into a star.

Close bond: Kevin with his mother Mary in 1996 as he received an honorary degree

Close bond: Kevin with his mother Mary in 1996 as he received an honorary degree

'It helps her to remember and gives us something to talk about, because otherwise the conversation can go round in circles,' says Kevin, 57, speaking for the first time about his mother's battle with Alzheimer's disease.

This is the most common form of dementia, which leads to the progressive loss of mental faculties. 'We will sit there watching it, and she will ask: "Are you acting in this?"

'But sometimes she doesn't recognise me at all. She is aware that I am a person who loves her and is visiting because I care for her, but she doesn't remember that I'm her son. She doesn't recognise any of her grandchildren or greatgrandchildren any more.

'It is so sad because she was such a bright and fiercely independent person, and it is incredibly hard for her family to watch her personality slowly disappear.

'From the time you are a tiny baby, a parent's love is usually unconditional. Whatever you do, your parents think you are the tops, but when their memory goes you stop recouping the love you've put in.

'I still act the same, I still love her the same, I still care for her the same, but gradually you get less and less love back. I feel as though I am grieving for the mother I have lost, even though she's still alive.

'I am lucky in that I have never been depressed in my life, but this is the one thing which has really affected me: the loss of my mother as I knew her.'

Kevin, who stars in the spin-off series, Lewis, may be one of Britain's most popular and high-profile actors, but he is a deeply private person. He is speaking now about his mother only because he wants to break down the embarrassment which surrounds the disease.

Kevin is a committed supporter of the Alzheimer's Society, which has just launched its Worried About Your Memory? Campaign, urging people to seek medical help if they are worried that their forgetfulness might be an early sign of dementia.

Sidekick: As the late John Thaw's second in command DS Lewis in the hugely successful Inspector Morse

Sidekick: As the late John Thaw's second in command DS Lewis in the hugely successful Inspector Morse

Around 700,000 people in Britain live with the condition, but the Alzheimer's Society estimates that by the year 2025 more than a million will have it.

One in three people over the age of 65 will die with it. Yet only a third of patients ever get a formal diagnosis, because people are often frightened of the condition and the stigma attached to it.

To give some idea of the taboo which surrounds it, a recent survey revealed that young people are more frightened of developing this condition as they grow older than cancer.

'I can understand that fear,' says Kevin, who would like to see people living with dementia afforded the dignity he feels they deserve.

'It's a terrible condition and I wouldn't wish it on my worst enemy. My mother does have a good enough quality of life, but she has been through hell to get there.

'What is most frightening is the lack of control. With something like cancer, there is a feeling that you can fight it in some way or control your response to it, but with dementia there is the fear of losing control of your mind and your life.'

Kevin, his brother and two sisters first became aware of their mother's failing memory eight years ago.

A former English and history teacher, Mary had lived alone in the family home in a small village near Hexham, Northumbria, since her husband Richard died of a heart attack, aged 53, in 1968.

A sprightly, intelligent woman whose passion was for crosswords, Mary was growing increasingly forgetful and almost obsessive about losing her car keys.

Although her long-term memory was still as sharp as a pin, her short-term memory troubled her.

'The first thing was that she kept forgetting where she had put her car keys,' says Kevin.

'Living in the wilds, she depended on getting around in her car. Then she started to forget where she had parked the car and began a ritual of always parking in the same place.

'She had a little terrier, who was her constant companion, and when she could not find the car she'd start to worry that she'd lost her dog - who she'd left in the car - as well.

'Increasingly, she started going to the police station, in a panic, asking them to find her dog.

'Then we received a phone call from her kindly neighbour, who told us she'd started wandering into his house next door, thinking it was hers.

'My mother was acutely aware that she had a problem, and very quickly became depressed about it, often phoning me or my brother or sisters and weeping.

'My siblings and I all live in the South, because of our careers, and Mum was stuck in the middle of nowhere in Northumbria, so we'd phone every day and take it in turns to make the 700-mile round trip to visit every weekend to make sure she was all right.'

Mary's four children were so concerned about her that they made an appointment with her GP, who referred her to a geriatric psychiatrist.

She was given anti-depressants and medication to help alleviate her symptoms, but her decline continued, and in 2003 she was diagnosed with Alzheimer's. 'Before my mother's diagnosis with Alzheimer's, I had heard of the disease, but hadn't known anyone who had suffered from it,' say Kevin.

We valued all the support and help we received which was exemplary, especially in Hexham.'

Alzheimer's attacks nerves and brain cells as well as the neurotransmitters - chemicals which carry messages to and from the brain. Their destruction causes clumps of protein - plaques - to form around the brain's cells.

The presence of the plaques start to destroy more connections between the brain cells, which makes the condition worse, leading to confusion, memory problems, frustration, mood swings, personality changes and depression.

It is still unknown what starts the deterioration, although age is the greatest risk factor; the chance of developing the disease doubles every five years after the age of 65.

Learning to deal with a muchchanged mother, whose frustrated behaviour sometimes resembled that of an angry or upset toddler, was a steep learning curve for Kevin and his family. Mary refused to give up her independence without a fight.

Terrified that she would lose her driving licence, Mary became adept at showing off the considerable mental skills she still retained whenever doctors tested her faculties using memory and arithmetic tests.

Kevin and his siblings, deeply worried about her wanderings - which had started to occur at night - discussed whether Mary should live with one of them, but their mother wouldn't hear of it.

The temptation, when a parent is sometimes acting as a three-year-old might, is to treat them like a child,' says Kevin.

Brickie: Whately's role as Neville Hope is probably his most famous

Brickie: Whately's role as Neville Hope is probably his most famous

'But our mother's specialist was wonderful in stressing that she still had her rights and dignity, and deserved to be treated accordingly.

'She wanted to stay in her own home, so we had to support her for as long as she was able.'

Once Mary had been diagnosed with Alzheimer's, carers and nurses would drop in every day, but Kevin says she often 'gave them flak', because, having been so fiercely independent, she resented being reliant on anyone.

By 2003, however, Mary's condition had declined so much that her doctor and children realised she was no longer capable of living alone, and she was admitted to hospital for her own safety.

'What really brought it to a head was when she started wandering at night, looking for her dog. Then when her dog died, her confusion and depression just deepened,' says Kevin, who is married to actress Madelaine Newton, 57, and has two children Kitty, 25, and Kieran, 23.

'We realised just how bad Mum's condition was when she came to stay with us one Christmas. She needed 24-hour supervision because of her wandering.

'My son is a bit of a night owl, so he would stay up virtually all night to keep an eye on her, and then we'd take over during the day.

'Once Alzheimer's develops, people regress into a kind of childhood and they need to be supervised for their own safety.

<p>'It is extremely distressing to see someone's personality disappear before your eyes. In her frustration and confusion, she could become aggressive and tearful.

'She didn't want to go into a care home, but if she hadn't finally agreed, the doctor would have had to section her for her own safety.

'But there is a huge shortage of suitable places in care homes for people with dementia, and we had to wait six months for some poor soul to pass away before we found a place.

'Even though the home was very good, Mum never settled there.'

In 2005, Mary was hospitalised and underwent a operation to remove gallstones. She contracted MRSA and almost died. Although she eventually recovered, she had by then forgotten how to walk.

'One of the things the Alzheimer's Society is fighting for is more formal training in dementia care among hospital staff.

'My mother was incredibly poorly for six months and the weight fell off her. Someone would bring her a tray of food, then collect it untouched because she'd forgotten to eat it. She suffered terrible bedsores, fell over once because she was so weak, and became incontinent.

'It is easy for a patient in those circumstances to lose their dignity, which causes them to become angry and aggressive, which many nurses aren't trained to deal with.'

Because Mary could no longer walk and her physical health was so poor, her doctors decided she needed 24-hour care in a nursing home. Again it was a struggle for Kevin and his siblings to find somewhere which was suitable and prepared to take her.

The nursing home in West London costs &pound;1,000 a week, which the family must pay for themselves as there is no NHS funding for private nursing care because it is so expensive. It is, however, worth every penny, in Kevin's opinion.

'The care is fantastic because all the staff are trained to cope with people in this situation,' he says. 'She has reached a plateau and is much more placid and contented.

'I live 70 miles away, and my brother and sisters live just around the corner, so we can visit her regularly. I still look forward to seeing her. She's still my mother and I love her, but at times it has been hell witnessing her anger and distress.

'It is ironic that just as your children are becoming more independent, your parents could be losing their independence through dementia.

'It is going to be a huge problem in the future, so people need to be aware and be able to talk about this condition without fear or embarrassment.'

Kevin is hopeful that future research might offer a cure or the possibility of preventing Alzheimer's in the first place (current treatments can slow the progression of the disease, but controversially are available on the NHS only to those with moderate symptoms).

In the meantime, Kevin campaigns for the Alzheimer's Society which is also calling for more training for medical professionals in recognising and treating the condition.

As for his own memory - 'Despite what has happened to my mother, I try not to worry too much about my own health,' he says. 'I don't do any brain exercises or eat health foods. With all the lines I have to learn for TV scripts, I don't think I have any problems with forgetfulness - that's brain exercise enough for me.'

Kevin is filming a new series of Lewis and will feature in a forthcoming episode of genealogy programme Who Do You Think You Are?

NOT ALL memory loss is a sign of dementia. Here, we explain the different forms.

GENERAL FORGETFULNESS

Stress is a big factor - when we're stressed, our bodies produce a hormone called cortisol. This can interfere with the energy supply to the brain cells involved in memory, impairing our ability to recall.

'It's common to forget things or walk into a room and forget why you're there,' says Dr Susanne Sorensen, head of research at The Alzheimer's Society. 'Usually, whatever you've forgotten will come back to you later, say, when you're relaxed. The time to be concerned is if this frequently doesn't happen or you often feel confused.'

So don't worry if you can never remember which coat pocket your keys are in. The concern is if you then find you left them in an inappropriate place, such as in the fridge. This is when you need to seek advice, says Dr Sorensen.

AGE-RELATED MEMORY LOSS

We all begin losing brain cells in our 20s, and over time, the body makes less of the chemicals the brain cells need to work. The older we get, the more these changes affect our memory. Age-related memory loss usually affects recent memory.

Ageing also affects howthe brain stores information, making it harder to recall. 'As well as the loss of brain cells, the older you are, the more memories there are to churn through,' says Dr Sorensen.

'This, of course, slows the brain down.' Background noise also can affect older people's memories because they can't ignore it while doing something else, California scientists have found.

DEMENTIA

Alzheimer's destroys brain cells, effectively killing off the brain itself. Recent memories are usually the first to be affected: it's common for a person with Alzheimer's to forget a conversation they had earlier that day, but remember a holiday they took 20 years ago.

'The brain is like a computer, searching through all its files trying to find a memory. But if the files are lost, you have a problem,' says Dr Sorensen.

'With Alzheimer's you also lose the ability to plan tasks and do them in the right order.

'A classic example is putting milk, rather than water, in the kettle when making the tea. Others get lost in places they know.'

There is not definite test for Alzheimer's. However, for more questions to help distinguish between forgetfulness and dementia, go to www.alzheimers.org.uk